Boo, Susan G. Komen, BOO.

(This picture was taken on one of my many trips in 2011

to NYC during a Stand with Planned Parenthood

event.)

Warning: This post has nothing to do with melanoma; 

however, it does have to do with early detection.

As you have probably heard by now, the group with the famous pink ribbon, Susan G. Komen, has decided to end their relationship with Planned Parenthood. What does this mean? This means that Planned Parenthood will no longer be receiving hundreds of thousands of dollars in grants per year to assist with the price of mostly breast exams. 

In basic terms, this means that many women will no longer have the opportunity to receive breast exams due to their financial situations.

This. Infuriates. Me.

As a teenager and as an adult, I have been a patient of Planned Parenthood a handful of times. I had health insurance, which I used for the visits, but the hours of operation made it possible for me to receive my yearly exams and birth control prescriptions. Every visit that I have had, I left feeling like the gyno actually listened to me, examined me, and cared about my health. I am always grateful for the 6 pm appointments that allow me to stay healthy but not take even more time off from work.

According to NPR.Org, "Planned Parenthood says the move results from Komen bowing to pressure from anti-abortion activists. Komen says the key reason is that Planned Parenthood is under investigation in Congress — a probe launched by a conservative Republican who was urged to act by anti-abortion groups."

Here is my argument: Planned Parenthood is about so much more than abortions.  I realize abortions are a hot topic; however, what about all of the women they are putting in danger because of this one topic? I get it, it's a big topic, I am not trying to say that it is not, but cancer is a big topic too. Early detection could--and it does--save lives!

Patrick Hurd, CEO of Planned Parenthood of Southeastern Virginia, AND husband of a breast cancer warrior, made a great point in the article: "It sounds almost trite, going through this with Betsi, but cancer doesn't care if you're pro-choice, anti-choice, progressive, conservative. Victims of cancer could care less about people's politics."

Amen, Mr. Hurd, Amen. 

Oh, and in case you didn't read between the lines, I will no longer support Susan G. Komen in ANY type of way.

*Other articles that may interest you: http://www.msnbc.msn.com/id/46243184/ns/health-womens_health/

http://www.cnn.com/2012/02/03/politics/planned-parenthood-komen-foundation/index.html?hpt=hp_t3


http://www.foxnews.com/us/2012/02/03/supporters-rally-around-planned-parenthood/

"Skanky Bitches."

I have been gossiped about a lot in my 24 years. No surprise there since I am from a small peninsula and I used to date a lot of dudes who were mentioned in the gossip grapevine frequently. What I am trying to say is that I have heard a lot of amusing stories and assumptions about myself, some true, some totally so far fetched that they still cause me to chuckle. However,  I heard one today that I just have to share with you.

My friend travels for a living and he was at a client's house this afternoon when he noticed a tanning bed. He casually mentions how unsafe tanning beds are for us. The client responded, and I quote, a tanning bed is "safer than natural sunlight."

(Ha. I would bet she heard that from her local tanning salon.)

Anywho, my friend immediately started telling this client about me and how I have stage III melanoma. Instead of offering sympathy or concern, this woman says, "Oh. She was probably one of those skanky bitches who abused it by going all the time."

That's a pretty big assumption, lady. 

I have never denied my tanning bed use. I wanted to be pretty, and I associated being pretty as being tan. However, I have always said I only went to a tanning bed before major events like prom, graduations, and vacations. I never went "all the time." I was never the girl with the constant bronzed skin. In fact, I was quite the opposite. Ha. Now that I am thinking about it, I remember sitting at a bar, and a dude said to me, "Do you ever go out in the sun?" Yeah, I was typically the ghost girl.

Yet, I am the girl--the first out of all of my tanning bed obsessed friends--who received the advanced melanoma diagnosis at only 23.

Today I read this article titled, "I wish I wouldn't have cared so much about being tan." The article focuses on pending laws in Missouri and Illinois that would restrict tanning for teens. In Missouri, the law will force parents to sign the necessary forms prior to their children being allowed to tan. In Illinois, the law would prevent teens from tanning at all.


Dr. Lynn Cornelius, chief of dermatology at Washington University School of Medicine, said in the article that she has recently diagnosed a lot of women in their 20s with melanoma. The article says that when Cornelius questions the women about their tanning habits, "the number using tanning beds is 80 (percent) to 90 percent of them," she said. "It's just alarming."

Don't let this:

Turn you into this:

Oh, and for the record ma'am, I may be a bitch, but I certainly am not a skanky bitch. ;-)

"...But I Will Get Up."

Lately I have received messages from quite a few newly diagnosed melanoma warriors. Like I was only a year ago, they are overwhelmed, stunned, scared (what an understatement!) and buried underneath statistics and scary medical terms. They come to me to tell me that my blog has given them comfort and allowed them to feel not quite so alone. This post is for these men and women. 

I know how you feel. It was only a year ago that I heard the news that melanoma had spread to multiple lymph node basins. It was only a year ago that an oncologist looked at me and told me that I am an unusual case. Just a year ago, I was shocked into silence.

Then I started writing this blog.

However you decide to handle your cancer is completely up to you. My only advice is that you actually handle it, do not allow yourself to get stuck in the denial phase. This is your life that we are talking about. If you do not like what your oncologist tells you, go for a second opinion. If you are not sure if surgery or treatment is the best option for you, reach out to others who have experienced both first hand. Do your research.

I know it's scary. I know that scared does not begin to cover how you are feeling. Death in general is terrifying for most of us. The idea of yourself dying is paralyzing. Recently, a new molemate asked me, "How do you accept that you may be about to die?" Well, I cannot say that I have ever accepted that. Dying is not an option for me right now. Stubborn, I know, but I never gave into that fear. If I did, I do not believe I would be where I am today.

When it comes down to it, life is what it is. We have no control over how and when we will die. It could be death by melanoma or death by a vampire. None of us know. All I ask is that you do not simply accept that you are about to die just because you have received this diagnosis. No, there are not tons of options, but there are options. Call me Ms. Cheerful, but I believe attitude plays a key part in our health. No, a positive attitude cannot cure cancer, but it sure as hell can make this experience a little less difficult for you.

I know you probably feel alone. As awesome of a support group as I had last year, I still felt completely alone. I knew my family and friends were heartbroken for me and desperately wanted to be the emotional support I needed, but they could not possibly understand exactly what was running through my head. I was a 23 year old girl facing her own mortality for the first time. When my mom introduced me to the online melanoma world, I expected it to be a bunch of weirdos, people I could not connect with, sharing their melanoma stories. I never imagined I would actually post my own questions and intimate stories. Instead of being a silent observer, I made friends. (OK, we are ALL a little odd, I was right about that, but maybe that is why we get along? XO!)  I never knew how people could connect in such a way over the internet until I was diagnosed with melanoma. I have made lifelong friends thanks to the forums, Facebook, and this blog. You don't have to be alone. Reach out to us. There are so many people who have felt exactly what you are feeling.

You are going to meet people in your daily life who believe melanoma is just skin cancer. They are going to tell you to get the mole removed and get back to your life. It is easy--and acceptable--to become infuriated with these folks. However, didn't you once think the same thing? I did. Educate them. And if they still believe you are being a drama queen (or king!) then maybe they are not the type of people you need in your life anyway. Melanoma is a sneaky beast. You have done the research. You know how it works.

Lastly, do not let your normal life get placed completely on the back burner. As many people have had to remind me, I have melanoma. Melanoma does not have me.  I am not melanoma.  (And yes, sometimes I still need to be reminded of this.)

Whatever you do, do not give up. That, my friends, is when melanoma wins.

Adjusting Sails

This is my new motto.

I left the apartment today for the first time since Saturday. I am feeling a little better, but I really beat after a very busy day at work. I saw this on pinterest and I knew I needed to share it.

Oh, check out this article that Time Magazine posted. It discusses why teenagers are so obsessed with tanning. Time quoted one girl saying something that came from my mouth many years ago, ""It may make my skin wrinkle a little bit earlier, but I'm going to look good while I can."

Oh, honey. I hope you learn before it is too late.

PARENTS, would you let your teenagers smoke? No? Don't let them tan either. Take action.

Either my stomach is so not a fan of this latest treatment or I have caught a nasty flu bug, but my tummy hurts and is rejecting everything I put into it. Fun, right? OK, enough complaining. It is so worth it.

I don't feel like writing, I am going to go back under my covers in just a few minutes, but I thought I would share a few blogs with you that I admire.

http://blackispink.blogspot.com is written by my buddy Al. He lost his brother to melanoma. Al posts great articles, especially regarding the latest treatments, etc.

http://itsonlymelanoma.blogspot.com/ is written by my sweet friend Becca. Her blog post "Conflicted" continues to run through my head even almost a month after she posted it.

http://jilliansjourneywithmelanoma.blogspot.com/ is written by the mother of a melanoma warrior. I find their journey to be very inspiring. Sometimes I think cancer is harder for those around than for the patients themselves.

http://letsgivethanks.blogspot.com is written by Rev. Carol Taylor. I know many of us find comfort in her words.

and don't forget about hotelmelanoma.blogspot.com. Rich has caused me to look like a mental patient, laughing my head off, in the middle of a busy waiting room at my cancer center. I love his way of handling melanoma.

OK, I need to do a quick degerming session (the kiddo is sick too) and then I am going back to my bed. I figure 48 hours in this apartment will have to make me feel better. I have to go back to work tomorrow!

"Perfect."

"Everything is perfect. 

See, I got right to it this time. I didn't make you wait."

 ~The Wizard, AKA, my oncologist.

He obviously remembered I do not like to make small talk when it comes to appointments where I receive scan results!

Here I am, celebrating with a cupcake,

while waiting for my turn in the Chemo Suite.

Yum.

I am really exhausted and fighting an upset tummy, but I wanted to post a quick update that both of my scans came back as PERFECT.

Thank God and all of you. I know I could not do this without your love and support.

ANOTHER 3 MONTHS OF FREEDOM! WOOOOOOOOOOOOOOOOOO!

Defying Gravity

My mom helped check off another item from my non-existent bucket list tonight: Seeing Wicked on Broadway!


I had heard from so many people that it was an amazing musical, but I had no idea just how amazing it would be. The cast was beautiful, beyond talented, and it all seemed so effortless to them. The people in charge of the special effects are just as talented. It really is Amazing. If you have the opportunity to go see it, please do. The Lion King & Chicago had nothing on Wicked. 
It  is that good.

Ice Skating in Central Park...Check!

Besides the fact that Memorial Sloan Kettering is where most cancer patients on the East Coast want to be, this city is perfect for me. New York City is filled with many, many, many distractions. Perfect!

Driving into the city after landing in Newark.

We found this while walking towards

Central Park.

Ice skating in Central Park

at night,

non-existent bucket list item,

CHECK!

It was magical to skate around, look up, and see the historic buildings around us.

Magical.

(And we actually were pretty darn good on skates!)

Now, I am off for for my cocktail & scans.

Then...WICKED!

Please let tomorrow be as good of a day....please.

"I Won't Worry My Life Away...."

It's Travel Day for this melanoma diva. I woke up early because I could not sleep--anyone surprised?--and I have worked myself into a nice little panic. Now I remember why NYC is the perfect city for me: plenty of distractions!

Mr. Spots is still in bed, savoring his last few minutes of sleep, and I can't help but wonder who I am going to come back as. Am I going to be his same girlfriend, the girl who can live a halfway normal life again? Or am I going to have to tell him the scan was dirty? When he picks me up from the airport on Saturday, will we be celebrating or crying?


Damn you, melanoma.

I know that I am simply freaking myself out because the unknown is so darn scary, and I know that once Mr. Spots wakes up, and I really begin my travel day, I will be fine. I, apparently, do not need this much extra time on my hands....

Three of my molemates are also going for important appointments today. My heart and thoughts are with Shawnda, Diane & Jennifer. Love you, ladies. Let us kick some melanoma booty.

Now, we can go listen to Jazon Mraz on repeat. You know, in case you need some positive reinforcement this morning....(OK, maybe that is just me.)

"We will cure this dirty old disease
if you've got the poison I've got the remedy

the remedy is the experience. It is a dangerous liaison
I say the comedy is that its serious. Which is a strange enough new play on words
I say the tragedy is how you're gonna spend the rest of your nights with the light on
So shine the light on all of your friends because it all amounts to nothing in the end.

I won't worry my life away.
I won't worry my life away."

I will write to you from NYC!

"Rise Up This Morning...."

 "Smiled with the risin' sun

3 little birds

pitch by my doorstep..."

Well, it is that time again. You know, the time when I have to actually become a cancer patient instead of just a cancer warrior. The nurse will call my name, take my blood, and hook me up the the chemo chair. Sometimes this all seems like a really bad dream. Then, my 3 months of freedom are up and I am kicked back into the real world of a cancer patient. I much prefer blogging at home...

As much as I want to say confidently that I believe I will have clear scans on Thursday, there is always that seed of doubt. Melanoma does not allow you to become overly cocky. I know that my life comes in 3 month spans right now. I will drink my nasty juice, lay in the machine that will scan my body, get my results, and then I will face them however they need to be faced. I can do this.

You will have to excuse my major freak out moments until I hear

that one word:

"Clear!"

My next few days go like this: Mr. Spots will take me the the airport where I will fly first class (Yay Mom and her dividend miles!) to head back to the big city. I will then try not to break an ankle ice skating in Central Park or Rockefeller Center. Ice skating in NYC is another silly item listed on my non-existent bucket list. This will be another item Mom has helped me check off. Thanks, Ma!!

Thursday I will head back to Sloan Kettering for two scans. After drinking the yucky juice, making small talk with the radiologist tech's who will know my results way before me--don't think I haven't thought about trying to get them to tell me if they saw anything funky--I will head back to the hotel and get ready for Wicked. I am finally going to see it! To say I am excited is totally an understatement.

Friday morning I will head back to MSK to meet with my own personal Wizard and receive my scan results. Hopefully this appointment will be a "healthy baby" check-up. I do hope he can help me figure out what is going on with my frequent headaches and the pain in my hands. On Sunday my left hand went totally numb as I was typing. That is not a good or normal feeling. Let's hope he has some answers.

Assuming that my blood work (all 17 tubes of it) is normal and my scans are clear, I will head over to the "Chemo Suite" for my 6th dose of either ipi or the placebo. I am still hoping for the hard stuff.

 

If you have a spare minute, I would not turn down a prayer or positive juju. 

And.....if you really want to make me feel special, schedule an appointment with your dermatologist. It's time you get checked out, too!

XO, friends.

"Singin' sweet songs

of melodies pure and true

singin'

this is my message to You-ou-ou...

Don't worry about a thing

'cause every little thing

gonna

be all right."

(Does anyone else find it a bit odd how much I love this song and depend on this song even though Mr. Marley himself died of melanoma? Oh well. I love it.)

Rest Now, Samantha.

I feel like I am writing this type of post way too often. Tonight I share with you the news of the death of our beautiful Samantha Channels. Only 37 years old, Samantha died last night after battling melanoma for 8 years. To say that the melanoma community is sad tonight would be an understatement. Our hearts are heavy as we pray for Samantha's family and friends.

I did not have the opportunity to become close with Samantha. Some of my mole mates were very close to her and that is how I 'met' Samantha. I was amazed by her overwhelming desire to educate others. The woman had passion. I will always remember and be inspired by it.

Yet again, I am reminded of why I fight so hard to educate others. Without education, there will be many others who will die too soon thanks to "just" skin cancer.

Picture

I will continue to educate--even at the chance of pissing off others--

for the Tina's, the Samantha's, and the Randi's

of our home,  

Hotel Melanoma.

It's My Cancer...

 ...And I will bitch about it if I want to.

Recently a person that I have to (unfortunately) remain pleasant to indirectly insulted me on her Facebook page. After having posted my blog discussing my cancerversary party, she posted a status update that basically said that I, without mentioning me by name, should stop talking about my experience, that she knows it has been a tough year but we all have them, it is over, so stop talking about myself, and simply be thankful to be alive. Obviously I am not an idiot and realized it was her (drunken) jab at me. (She actually posted that she wanted to make me cry. Mature.) I debated long and hard if I should sink to her level and respond to it or simply let it go. It was Friday the 13th and I was in no mood to take bullshit. So, I responded....

And then she deleted me.

Ha.

It got me thinking though.

Melanoma is an odd disease. It does not go away. Ever. Sure, you can--and want to--show No Evidence of Disease--but that does not mean that you no longer have melanoma. It simply means that you are in the maintenance phase of blood work, scans, and hopefully, as my oncologist kindly refers to them, "healthy baby check-up appointments"  It does not mean that your run in with cancer is over.

Although what Mrs. Home Girl referred to as my tough year is over, I continue to fight to stay ahead of this disease. I can't skip a 3 month scan because I am busy at work. I can't claim remission and go back to living the life I used to live. It just does not work that way. Someone else may see my fight with cancer as being over because I am not having surgeries every other month or heading to the oncologist numerous times a week, but that is where they are wrong. For 3 months at a time, I can start to feel a little secure that I am healthy. 3 months until the anxiety returns.

Ironically, I have received a few emails recently from fellow melanoma warriors who state that they also "had" melanoma. This makes me nervous. Does their use of the past tense mean they believe they are in the clear? Do they follow up with their oncologists? Do they monitor their blood work? Or will they be the folks who find out about their reoccurance too late?

I decided it was time to ask my fellow warriors how they describe their melanoma. Do they say that they have Stage ___ Melanoma or do they say that they had Stage __Melanoma.


My most favorite responses thus far were these:

"I say have. I may have clear scans for the moment but since you are never in remission with melanoma... it's current to me."

"Interesting topic...I usually say. "I was diagnosed at stage IIIB in 2008." This is certainly a sneaky beast. Maybe using the past tense gives people the sense of stability in an uncertain situation."

"Chelsea- as you know I have been on chemo for the last 2 years and been NED for most of those 2 years. I get asked ALL.THE.TIME if I am in remission. My answer is always no. With Melanoma I will probably never be "in remission" I will always be on some sort of chemo and I will forever battle Melanoma. That's just the new normal for me. I'm ok with it. Kind of..."

I know that people not directly affected by my experience probably do get annoyed with my constant postings about articles or videos regarding melanoma especially since they believe I am going to be just fine and that it is time to move on. This is why Facebook has a defriend option thought, right? At the same time, I know that I have many friends who appreciate my posts. Besides, this is my cancer. Until you walk in my shoes, you can't tell me how to act.

Bottom line, let us all remain vigilant and continue to educate until there is no more educating to be done. Let us live our lives in the way that we know best.


           (Oh, and let us have the ability to kick the people who bring us down out of our lives.)

"But understand this: my commitment to living in the now means I'll never ever say that I've beaten cancer. To do so would be living in the "tomorrow," if you will, and melanoma is far too erratic an opponent to go around making predictions. But I can tell you for sure that I'll never give in to it. Life is too precious to give it up without giving everything you've got -- now."

Dr. Jack Ramsay.

Dr. Oz. vs Chelsea Handler

The media has the ability to make or break things. I mean, it is Coco Chanel's fault that tanning became popular in the first freaking place. The media has the ability to change the mind of every single person in one way or another. This is why I am pissed off at Dr. Oz and a little in love with Chelsea Handler.

Dr. Oz recently aired an episode that featured Dr. Joe Mercola. During the episode, Dr. Joe Mercola recommended UVB tanning beds as a source for Vitamin D. Dr. Oz played right along with it. "It's going to shock you all, so listen carefully!" I can't even describe this conversation...You all need to watch this. View clip here. Dr. Oz actually says, "I am re-thinking tanning beds." He does stress that he is not suggesting tanning beds for a tan, but for a health benefit for vitamin D. But still, how many people heard this and said "Finally! A doctor is finally admitting that tanning beds are safe!"

Like the warriors that we are, melanoma folks from all of the world attacked Dr. Oz for this clip. We posted on his website, we sent emails, we shared his link expressing our anger at such an idiotic thing for a doctor to suggest. Here we are, fighting for our lives, and a doctor is suggesting 3-5 minutes in the tanning booth. I guess the folks who work for Dr. Oz heard our anger. Today, Dr. Oz released this statement. that discusses how he believes no tan is a healthy tan. He says, boldly, " In am in no way recommending the use of tanning beds. No tanning bed is safe – avoid them entirely." 

Interesting, Dr. Oz, because that is not what I assumed while watching your show.....


Yesterday I saw something in the media that made me smile and be proud that information is getting out that. Comedian Chelsea Handler had the super tan Pauly D from Jersey Shore on her show. During the interview Chelsea questions Pauly about his sunburn and tanning bed habits. She tells him that tanning is dangerous and that she does not want him to get cancer. He says something like "Thank you, I appreciate it" and she automatically responds, "No, you don't!" Chelsea blurts out that because of tanning bed use, chances for skin cancer rise to 75%. She is right, they do!

Chelsea says, "you know how bad the tanning booth is for you, right? Seriously, you need to get a spray tan. GIRLS, listen to me!" Pauly D, of course, uses the excuse that he gets his vitamin D from the tanning booth. Plus, he likes to feel the warmth from the tanning bed. She immediately responds, "Then you deserve cancer."

Ha!

Chelsea does not let her lecture end there though. Later on during the show, Chelsea says, "Girls love this show. This is me and my girls, that's why I'm telling my girls not to go tanning because I want to protect young girls. And they shouldn't go tan. You can get a spray tan. I mean, they don't smell great but they are a better alternative."

I knew I liked that Chelsea.



If you want to view some Truth about Vitamin D, view these sites: Black is the New Pink, The Skin Cancer Foundation,  Mayoclinic.com

Suprise!

This past Monday I was shocked once again by my unbelievable support system. I knew that Mr. Spots had something up his sleeve because he was being awfully secretive and would not let me stay in my pajamas that I automatically change into after work. However, I had no idea how many other people were involved in this secret....

Mr. Spots, the kiddo, and I headed out for dinner Monday night. Once we arrived at one of my favorite restaurants, I started glancing around the parking lot to see if any of my friends were in on this dinner plan. Not seeing any familiar cars, I decided that Mr. Spots had not been lying, it was, indeed, just a special dinner for the 3 of us. The hostess even played along, "Party of 3, right this way!"

She led us into the party room where a group of my friends were patiently waiting! Surprise!

It was so nice to spend the evening with people who have supported me throughout this past year. Right before dinner was served, I received another surprise. My friend Rayna announced that there was someone who was very sad that she could not attend my party. Because this friend still wanted to help me celebrate, she had arranged for Rayna to order a bottle of champagne and give me a letter to read when receiving the champagne.

I was so lucky when melanoma introduced me to Anne a year ago.

She is one of a kind.

I received another special gift from another woman who has fought her own battle this year. I met this woman this past April before the benefit that local bands did for me here in Roanoke. She is a woman with a huge heart and a lot of love to give. She recently lost her husband due to a massive heart attack, but despite that, she continues to encourage others, offer love and support, and be the same beautiful woman that she has been since I was introduced to her. She inspires me. Alyse gave me this necklace that she has had for 40 years. It stands for good health. Alyse explained that she wants me to have it, keep it for 40 years, and give it to someone else who needs to be reminded that a healthy future awaits her. 

Phew. She believes I am going to be here for 40 years to give the necklace to someone myself. Let me tell you, I had to struggle to keep the tears in check for that one!

After we celebrated with great food, delicious wine, and bubbly bubbly, it was time to head home. Since we had the kiddo, Mr. Spots headed home early so that he could get kiddo tucked into bed without rushing me away from my friends. (Have I mentioned he spoils me?) I thought the special night was over....

That was not the case, Rayna had one last surprise up her sleeve.......

Rayna had contacted some of my melanoma friends and asked them to write me a letter and then she put all of the letters into a scrapbook. Oh, waterworks...To know that some of my fellow warriors took time out of their very busy schedules to send me a letter of inspiration means so much to me. On the flip side, to have a friend who knows how important my molemates are to me means the world! I am, truly, a very blessed young lady.

I ended the night with one extra glass of wine, my guy next to my side, and reading my special book.

Melanoma, you have changed my life dramatically in this first year, but I have gained lifelong friends because of you. For that, I am, and I will always be, grateful.

One year cancerversary!

Until Then.

I have an exciting night to share with you just as soon as I start to feel better. I am fighting a nasty cold.

Until then............

Picture

Life of a Drama Queen

Before melanoma I would not have analyzed every headache, every low grade fever, and every swollen lymph node. Now, I have been known to call my mother after her bed time, crying, because I have a swollen lymph node while battling a cold. Cancer makes you a tad bit paranoid. OK, maybe a lot paranoid.

My latest freak out is over my hands. I have been having pains in my left pointer finger since November. It would swell and ache for no reason at all and then go away. I would struggle to open a water bottle. Now, the pain is in every single finger. It feels like I am progressively losing strength in my hands. It makes me want to shake them, to wake them up, to do something to make the blood flow again. This morning in the shower I struggled to squeeze the bottle to get conditioner out. Today at work I battled with the old stapler. It hurts to bend my fingers. It hurts to stretch my fingers. There is no making it feel better. My hands ache, friends. They ache!

I would not freak out about this if I had not also been experiencing such bad headaches lately. I KNOW that I need to go to the eye doctor (it's on my to do list for next week) and I know that I stare at numbers and a computer all day, so having a headache is honestly not that surprising. I don't know if I wait too long to take medicine to fight the headaches, but I become dizzy at times as well. The combination of a headache, the dizziness and losing feeling in my hands is causing me to go a little batty.

I needed advice last night. I don't often post on the Melanoma Research Forum because I feel like there are so many other people that have genuine needs and advice. I am--luckily--in a stage with this cancer that I do not need too many questions answered. Last night, however, I needed advice. Those folks, as they have in the past, helped me. They linked me to a website that list side effects of ipi (yervoy) and sure enough, numbness of hands and feet is on the list. (PS, Mr. Spots, now I have an excuse as to why I am cold all the time lately--I am usually hot--It's a side effect!)

I, then, had a nice little pity party for myself on Facebook. I was upset because the fear lives within me. After Randi passing away last week, my mind played games with me. About six years ago, Randi was in my shoes. She was beginning to live a life with stage III melanoma. Now, she's gone. Fear.

I am so grateful for melanoma friends on Facebook because despite my pity party, they came to my rescue with support, love, and suggestions. It was brought to my attention from someone actually receiving yervoy--for sure-- that weakness/tingling/numbness/aches in the hands and feet are actually a side effect of ipi (yervoy). Well. I was not aware.....

My oncologist, The Wizard, questions me about my hands and feet during every appointment, but I just assumed it was because of all of the nerve damage I have in my neck/arms due to the surgeries. I did not realize it was a side effect of the drug. Maybe this very uncomfortable pain is not such a bad thing after all....

Still, because the pain was getting to me emotionally and physically, I called my oncologist today. I was unable to speak to him, but the nurse (not my favorite research nurse, just a normal nurse) indicated that there may be a need to add a head CT to the next set of scans on the 20th. I am supposed to hear from my oncologist on Monday. I would assume that because headaches and numbness of the hands are both side effects of the drug, my doctor will pass on the additional CT unless my blood work is suspicious. I trust him.

Sometimes I have to give into the fear, throw myself a pity party, then realize I am being ridiculous.

Maybe I really am getting the drug after all...........



(However, if you wouldn't mind throwing a prayer in that the joint pain and headaches are nothing serious, I would really appreciate it.)

Learning from Grey's Anatomy

 Izzie, stage IV malignant melanoma

I have discussed throughout this blog how most people think melanoma is not a big deal. People assume that they will have a mole removed and that will be that. I used to be one of those people too. I can't tell you how many times people have said something like "They will remove it, and you will be fine." That is not exactly how it works with advanced melanoma...at all.

I am quite anxious for the next season of Grey's Anatomy to begin so I was browsing online about their past seasons. I remembered that in season 5 of Grey's Anatomy, Izzie learns that she has stage IV malignant melanoma. Although I do not agree completely with the way melanoma is portrayed  in the series, there are a few parts that hit home.

Here is what happens when Izzie's mom arrives to the hospital after learning her daughter has a type of cancer:

Izzie: Um, mom, just um, just listen ok? I... I don't have breast cancer. Ok, I have skin cancer. Or, what started out as skin cancer.
Mrs Stevens: Wait, hang on. Skin cancer? Oh, God! Izabel Stevens. Oh, you scared the hell out of me. And then you made me come all the way up here to Seattle just for some ugly old mole. Oh, sweetheart." (http://www.tvfanatic.com/quotes/shows/greys-anatomy/season-5/page-7.html)

How many of our friends/family reacted in this way? Of course they probably showed more sympathy and concern, but some probably blew it off as no big deal, right?

And then reality hits...........

"Izzie: Mom. It's not just a mole. I have stage 4 melanoma. It's in my organs. It's not just a mole.
Mrs Stevens: You don't have skin on your organs, hun. That doesn't make a whole lot of sense. Don't just sigh at me Izobel. Just, you know. Just explain.
Izzie: Ok, um, you remember when Grammy had that tumor on her thyroid?
Mrs Stevens: Grammy died. She died, she... really soon after that she died. Wh... why are you t... telling me this? You have a mole. I don't understand. You, you just... you have a mole. Wh... what. Wh...
Izzie: Ok. I'm sorry. That was a really bad comparison."

Izzie tells her mom that it is a bad comparison because her mom begins to grasp the fact that her cancer is cancer, it is not just a mole that has to be removed. You can see her shock in realizing that melanoma spreads beyond the skin. It is shocking because we all assume melanoma is juuuust skin cancer, we assume it is one of the better cancers to get. Melanoma is not curable. Remember that.

One last thing. What do you say to someone who has just learned of their diagnosis?

"Izzie: You say, they have a choice. They can runaway and hide from it, or they can face it. You say they need to be around the people who love them, because it's gonna be the toughest fight of their life, and no one should have to do it alone. And then you give them the odds. And even though a 5 percent survival rate is bad, it's really bad. You say.... you say....
Lexie: Screw the odds! People die of the hiccups. My mother died of the hiccups. Survival rate for that is what... 100 percent? The odds are that she should be alive right now. The odds are... The odds are crap! So people should face it and they should fight." http://www.tvfanatic.com/quotes/shows/greys-anatomy/season-5/page-14.html

That's right...

The odds are crap. 

Let's face it 

and FIGHT.

Something Beautiful

One week from today is my one year cancer-versary with our dark friend Melanoma. One year. Wow.

As you would expect, I have a lot of thoughts brewing. I did not sleep well last night. My sister and boyfriend joke that when I go to sleep, I look like I am dead, meaning that I do not move, snore, or anything that most people do in their sleep. (Although I do have frequent pee breaks. What can I say? I have the bladder the size of a pea.) They recently confided that when I was recovering from surgeries this past year, they both would get extremely close to my face just to verify that I was, in fact, alive. According to Mr. Spots, I have been tossing and turning lately. Anxiety? Or is it just the new Stephen King book interrupting my usually peaceful dreams?

I am not ready to blog about my anxiety tonight. Instead, on this cold Tuesday night in Southwest Virginia, I am going to go curl up to my guy. In my other blog, I once said, that like Elizabeth Gilbert, "I deserve something beautiful."

 I believe, with my whole heart, that I have found it.

Dear 2012

Sometimes someone else says something so well that I do not need to post anything except a link to the blog and a quote from the amazing post. This time it comes from my friend Becca.

"2012 I won't ask for much, just let me live and enjoy every minute. Let me laugh, let me show love to others, let me feel the sun on my face without fear.

And if anything bad should happen...

Let me FIGHT."

~Becca C.

She read my mind.